Glen Burnie woman rides through adversity to strength

Lauren Williams of Glen Burnie, uses a hand cycle to stay active and fit as she deals with the effects of Friedreich's Ataxia, a degenerative disorder of the nervous system. (Lloyd Fox/Baltimore Sun video)

Lauren Williams of Glen Burnie, uses a hand cycle to stay active and fit as she deals with the effects of Friedreich's Ataxia, a degenerative disorder of the nervous system. (Lloyd Fox/Baltimore Sun video)

Jonathan Pitts, The Baltimore Sun

Lauren Williams and her father unbox the treasure: a three-wheeled cycle, powered by the arms.

Larry Williams adjusts the footrests and affixes Lauren's feet with Velcro straps. Lauren, 26, narrows her eyes in determination, pushes one pedal with her right hand, the other with her left, and rolls away at a good clip.

Her father, a baseball coach, watches her go.

"If I had a team full of players like her, I could own the world," he says.

For other young adults, a new bicycle might mean an opportunity to shed pounds, travel sustainably or just get out in the elements more often.

For Lauren Williams, who won the $4,000 hand cycle in an essay contest, it's a chance to do things she could otherwise never dream of.

The Glen Burnie woman has Friedereich's ataxia, a rare but severe neuromuscular disorder that causes progressive degeneration of nerve and muscle tissue.

Over the past 17 years, it has robbed her of normal coordination in her limbs, slowed her speech, distorted her spine and placed her in a wheelchair most of her waking life.

Friedereich's ataxia affects about 20,000 people in Europe and North America. There is no known cure.

"When I look at everything that's happened since I was diagnosed, then try to picture what's going to happen from now on, it can be a little scary," Williams says.

For now, she says, she's focusing on what she can do, not what she can't.

Onset

Lauren Williams was an active child. It runs in the family.

Larry, a former minor-league infielder in the Pittsburgh Pirates system, runs BATT Academy, a baseball training site in Glen Burnie. Lauren's older brother, Anthony, is head baseball coach at the University of Pittsburgh at Greensburg. One grandfather, a World War II combat veteran, became a champion marathoner in his 60s and still runs the races at 89.

From kindergarten on, Lauren hit the soccer field, practiced jazz dance and ballet and was out riding bikes.

"You couldn't keep her in the house," Larry says.

But when she was 9, she began to experience a change. While using roller blades, Lauren started losing control and falling.

Her mother, Pat, and father took her to a neurologist. Upon spotting her stagger, he diagnosed her almost right away.

"I had no idea what Friedereich ataxia was, and neither did" her parents, Lauren remembers. "But when the doctor talked to them, I remember the shocked looks on their faces." she says.

The family rode home in silence.

Friedereich's ataxia, an inherited disorder, affects just one in 50,000 people in the United States. Sufferers have a defect in the gene that creates frataxin, a protein the cells use to create energy. The lack of frataxin leads to degeneration in the spinal-cord neurons that control the muscle movement of the arms and legs.

Those with FA, as it's called, experience gradual loss of coordination in the limbs, increasing slurring of speech and susceptibility to intense fatigue.

"It's slowly and relentlessly progressive," says Thomas Crawford, an associate professor of neurology and pediatrics at Johns Hopkins Children's Center. "It robs mobility and coordination, making all the usual bits of normal life more and more difficult over time."

Sufferers have higher-than-normal risks of developing scoliosis, diabetes and heart disease. Most rely on wheelchairs. Average life expectancy is 40 to 50 years.

Lauren's parents were unable, at first, to find a comfortable way to discuss the diagnosis with her — in part because they didn't want her dwelling on bad news she couldn't change.

Even Lauren, who heard the diagnosis and the doctor's explanation, couldn't take it in.

"I knew it was something serious, but I didn't," she recalls. "I figured it would go away in six months. I had no idea how FA was going to affect my life."

Withdrawal

First came years of denial. Between 9 and 14, Lauren found herself stumbling frequently, veering into objects. She lost the ability to dance, her speech slowed and she tired quickly.

Still, she didn't look much different. Much of the time she felt all right. She'd figured she'd get better.

At 12, she tried out for softball. She focused enough to smack a few line drives, but dropped the ball so often she didn't make the cut.

"I brought her home, went into my room and cried like a baby," her father says.

At 15, she was ready for answers. She sat down and Googled "Friedereich's ataxia" (it's named for the German physician who first described it) and began to read.

The details were a horror. She would not get better. She would lose the ability to cook, get dressed, walk. She might develop a curvature of the spine requiring surgery, as well as diabetes or cardiomyopathy, the heart-muscle failure that kills more ataxians than any other side effect.

FA presents a tough paradox, Crawford says. It leaves brain function untouched, but that means sufferers must come to terms with a difficult fate.

"We're talking about normal people inside these increasingly distressed bodies," he says.

In Lauren's case, grasping facts didn't help at first. The harder she tried to walk straight, the more she veered. Schoolmates mocked her speech. Friends found her condition so awkward they began avoiding her. Back pain, depression and a stomach ulcer followed.

Just before the 10th grade, she asked her parents if she could be tutored at home rather than go to school. They said yes. For two years, she rarely left the house.

"I was so ashamed," she says.

Standing up

As she reclines on her souped-up trike, Williams seems relaxed, her gracious smile appearing as she slowly articulates her words.

Five years ago — before she took up adaptive sports, including skiing and bike riding — talking about life with FA would have tired her out.

Williams can't explain when it started. Maybe it was her family's sporting history. Maybe it was visits with her marathoning grandfather, Lou Lodovico, who kept telling her that what matters isn't how much you have in life, but what you do with it.

Something was stirring.

"Somewhere inside me was a little voice that said, 'OK, this is enough. Do something,'" she says.

Without telling her parents, Lauren applied to an internship program at Disney World in Orlando, Fla., and was accepted. She lived on her own for the first time, learned to maneuver in a new wheelchair and served eight months as a safari guide.

"That was the scariest thing I've ever tried to do," she says, "but I found out that the scarier something is, the more rewarding it is when you succeed."

Through a friend she met in Florida, she learned about the Friedereich's Ataxia Research Alliance, an advocacy group based in Downingtown, Pa. She befriended others living with FA.

She read about a member of FARA, Kyle Bryant, an accomplished young athlete who had been diagnosed at 17. Without an bicycling experience, he decided to ride an adaptive bike from Southern California to Memphis, Tenn., in 2007, for the opening of the annual National Ataxia Foundation meeting.

He raised more than $100,000, scheduled more events and, in 2012, competed in the 31st annual Race Across America, a competition in which hundreds of able-bodied cyclists ride from Oceanside, Calif., to Annapolis.

Bryant's four-man team made it in eight days, raising $800,000 for research. Lauren was among the supporters who met him at Annapolis Harbor.

"You wouldn't believe the party that weekend," she says.

She'd already rented a hand cycle of her own, riding for brief stretches. In 2010, she entered Ride Ataxia, a Philadelphia-area event. She had never topped a mile, but that day, she rode 10 and raised $1,500 from sponsors.

"Just being there with all the other people that were suffering from FA pushed me," she says. "Every time I wanted to quit, that's what I would think about — how many people are suffering with this illness. I was tired and sore, but I felt like I was standing up to FA and saying, 'You're not going to control my life.'

"I'm going to remember that feeling forever."

Reaching out

Crawford urges those with FA to focus not on what they can't do, but to recognize what they can still do while they can. Lauren Williams takes that to heart.

Through the nonprofit Baltimore Adapted Recreation and Sports, she began trying the activities that scared her the most. Each night before an event, she woke up terrified of what might happen: When she tried water skiing, would she drown? On the slopes, would she it a tree?

"These events were scary, but the feeling I got afterward was always worth it," she says.

Lauren admires the way they handle a situation that "is probably more painful for them than it can ever be for me."

Though she can't walk, suffers from scoliosis and has back pain so severe she rarely sleeps through the night, Lauren lives in her own apartment, gets around by bus, volunteers with the Anne Arundel County Commission on Aging and Disabilities, works out and competes in wheelchair rugby.

Last year, she applied for a grant to purchase the recumbent tricycle. In an essay she wrote: Adaptive sports "really inspired me to not see FA as a road block, but an obstacle that will give me a greater feeling of self-worth every time I overcome it."

She won, the bike arrived in March and now she's training to ride alongside runners in three events, including fundraisers for people with diabetes and in need of service dogs.

Crawford says FA is attracting researchers who are doing promising work, though he says there's no telling how rapidly answers will come.

Williams says the issue for her is less about how long she's going to live than how well. That's something she can control.

She sits on the bike and grips the pedals.

"I used to think of myself as weak, and I'll bet that when people look at me, they still think I'm fragile," she says. "I like not being how I seem."